Tuesday, April 20, 2010

Today you would have been three weeks old. I miss you so much. I think about you all the time. I put your slide show on and just stare at your pictures. I still wake up hoping it's a bad dream and that you will be here. Once I look around and see that your not, it breaks my heart. I don't know what to do. I beg for you to come back. I beg for an answer to why you had to leave me so soon. At some points of the day I feel like I can't breath. The idea of not seeing you again drives me insane. So many thoughts run through my mind......

I wish I could wake up in the middle of the night and change your diaper or feed you.I wish I had more memories.I wish I would've spoke up more to the doctors and nurses.I wish I would've been able to take away your pain.I wish I could've kept you inside me longer.I wish you were here.

The other day I received your insurance card in the mail and realized you would never use it. We go to the store and I see baby clothes and think how adorable you would've looked in them. I get coupons for diapers, wipes or baby lotion in the mail and realize I don't need them because your not here. I can't help but to think how unfair it is.

When I was little my parent's would drive by this cemetery and I remember not being able to look at it. It gave me chills. What's crazy is that's the cemetery where you are now. I can't help to think that that's the reason why I couldn't look at it.

I love you Ramon. You are the sweetest gift that I have ever gotten. I loved every second I got to be your Mommy. I hope you know that. To me you were perfect. I miss you and I pray that one day I will get the chance to be with you again.

Tuesday, April 13, 2010

The first two months of my pregnancy I bleed heavily. I went to the Emergency room a couple of times because I kept thinking I was having a miscarriage. Thank God I wasn't but I never got a answer to why I was bleeding so much. They just gave me a RhoGAM shot because my blood type is O-. I did a routine blood work test and it came back positive for an abnormality. I was then referred to another clinic where they did amniocentesis. When the results came back in it showed that our baby had Chromosome 9 ring. It's a very rare chromosome disorder and so there isn't very much information out there to help. I was so scared I didn't know what to expect and the doctors at that clinic were pushing me to have a abortion. I remember the genetic counselor sitting me down and telling me to think long and hard because I had a 3 year old daughter that I needed to put first and what her needs were. That a baby with special needs would take away from her. The genetic counselor went as far as to give me numbers and addresses to doctors that preformed abortions to high risk mothers as far as 32 weeks into a pregnancy. My mind was made up when I felt him move. When he would kick me or when I felt any kind of movement I would get so excited. I couldn't hurt him. He was my baby regardless of what some test or doctor told me. So I decided to continue my pregnancy. My whole pregnancy a part of me was afraid of what could be wrong with him but all the ultrasounds he seemed to look fine and healthy. Only that he had a V.S.D. in his heart. They were not sure how serious it was and they wouldn't know for sure until he was born. The ultrasounds that they were running were through my stomach which made it kind of hard.

When I went back to my original doctor for a routine check up he saw the results of our babies test and told us he couldn't deliver a baby with that disorder that it was out of his hands. So he gave me all my paperwork up until then and sent us on our way. I kept going to the other clinic in Austin, TX because they would run ultrasounds to see how his growth was and they told me that their advice would be to deliver my baby in Austin but we choose to go to Temple,TX instead because it was closer and if I went into labor I could get there quicker. I believe that was my first mistake. The clinic in Austin set us up with a Pediatric Cardiologist in the Scott and White hospital named John Pliska. So I then was set up with a high risk doctor at the same hospital named Richard Jones. It felt like things were finally going well and that I had things under control. The rest of my pregnancy went good. I was going in every Thursday towards the end and they would run stress test on the baby. I went for a check up on the 29th of March and by that time my stomach kept getting tight and I didn't know if it was Braxton Hicks or if I was in labor. The nurse that checked me out said that it was contractions and another doctor came in to see how dilated I was. 3 inches and they planned on inducing me the following Monday. Which was the 5th. My due date was between the 9th or 12th. I didn't think I would make it til Monday but we left anyway. When I got home the contractions just got worse. I was getting horrible cramps with the tightening of my stomach. It also kept feeling like I had to use the restroom but every time I would try, nothing. Then my mucus plug came out. I looked it up online because that's what I do. I Google everything and it said that in some women it happens and it doesn't mean that your in labor. So I ignored it and when about doing routine things. We walked to the park to let the kids play but my cramps were getting so bad by then that I had to go back home. When we got home I started cleaning to take my mind off the pain. So there I was sweeping up a storm. I even ended up taking a hot shower because I thought that would calm the cramps down. Eventually my boyfriend ended up taking me to the hospital. When I got there they checked to see how dilated I was, 3 1/2 cm. Then 4 and so they admitted me. Then 7 and 10 and then my beautiful baby boy was born March 30th, 2010 at 5:57 a.m. Weighing 6lbs 5oz and 18 inches long. A part of me was so scared to look at him afraid that he would be deformed as shallow as that may sound but when I saw him I fell in love. He was suppose to go straight to the N.I.C.U. of the hospital but the N.I.C.U. decided just by seeing he had 5 fingers and toes that he was fine to stay with me instead.

I should have spoke up but to be honest I didn't know. I believed he was okay but they should have known better.
He was with me a few hours before everything got bad. First he was having problems keeping his temperature on his own so they put one of those heating beds in my room. When he would reach the temp they thought was okay they would give him to me. He at one point became very fussy and I told the nurse that I thought he was hungry. I was trying to breastfeed but my milk still had not come in. So the nurse asked if it was alright to feed him formula til it did. Of course I didn't want my son to be hungry so I said okay. The nurse took him and said she was going to feed him 5 to 10 ml of Similac. When she walked him back in she told me she got him to eat 20ml. I said "Wow, that's a lot don't you think?" She went on to saying no that it was okay. As she was bringing him around the bed I noticed his face was blue and I got up and said what is wrong with my son?! She then said oh it's okay, hold on. Three women then came in saying they were from the N.I.C.U and they put him on oxygen and took him to the N.I.C.U. We went with them and they put him under a heating machine. The bed number was 26. It didn't even have his name. It said Baby Boy O'Neill. I tried to breastfeed but my breast milk still wasn't in and he was still fussy so they inserted a feeding tube down his throat and started feeding him 20ml of formula that dispensed for 30 minutes every 2 1/2 hours. I noticed he was breathing differently and I would bring it to the nurses attention but there was always a off the wall reason why it was okay. His stools started getting looser and looser and smelling worse and worse. I brought that to both the nurse and doctor's attention but again it was blown off. I was changing his diapers when I would be with him and the last diaper I changed I noticed blood in his stool. Then blood coming out of his mouth. By then we had been informed that he needed heart surgery and was being transferred to Dell Children's Hospital in Austin, TX. We were so worried because we didn't know what was going on. They ended up taking my son in a helicopter to the other hospital. We drove to Austin and when we got there they let us see him for a few minutes and then asked us to leave becase they were inserting I.V's in him. We went to the waiting room and a doctor came in and told us what was going on with our son. She asked about his Chromosome disorder and what we knew about it and from there went on to saying that he needed to have surgery on his intestines. That they had ruptured and the acids were eating at the rest of the intestines and going into his blood. We asked about his heart and she said his heart problem was under control and wasn't an issue. We thought it was weird because the other hospital said he needed heart surgery. Well, we went in to see our son and his stomach was swollen. Soon after he ended up going into surgery. He was in surgery for 2 hours. The longest two hours of my life. The doctor came out and told us that he had to take 80% of his intestines out and had to leave some that were not that good because he couldn't afford to loose much more. He also removed a 3rd of his colon. He said he didn't know if he would recover from the surgery. So after that it was all downhill. The nurses were sweet and cared for him we could tell. Matt also took care of me. He tried, I made it hard I know.
We watched our son swell back up. We watch them insert him with more and more I.V's with so much medication. He was on a oxygen machine and his heart rate just wouldn't get right. Neither would his blood pressure. Our son was slowly dying. The doctor came in, in the morning of April 3rd and told us that they used all their resources and could not do much more. We still had hope. Talking to him, praying, holding his hand. So I tried so hard to stay awake but I couldn't anymore. I was falling asleep by his side and was afraid I would end up grabbing him and pulling him so I moved to the chair on the side. I let go of his hand. I dosed off no more that 10 minutes and woke up to the machines going off and tons of nurses and doctors in the room. They told me to hold his hand so I jumped up and grabbed his hand. They were pushing his chest and his heart rate kept going down. They asked us if we wanted to take him off the machines because he was dying. We didn't know what to say. They put him in my arms and we said our goodbyes then took him off the machines. We held our son, dead. Kissing him and telling him we were so sorry. We walked him to the hearse a hour or so later and Matt put him in the hearse. We both kissed him goodbye and ended up leaving that hospital without our son.